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What Would #ThisNurse Say? Local Grieving Postponed, A Nursing Backstory

This post is by CHMP’s graduate fellow, Amanda Anderson, RN.  Amanda is a practicing bedside nurse in Manhattan, and a grad student at the Hunter-Bellevue School of Nursing, where she co-directs The Nurses Writing Project. Her personal site, This Nurse Wonders, hosts her writing, and she tweets @12hourRN01010394There’s really nothing in this world that prepares you for care of a brain dead patient. Certainly nothing in nursing school, anyway. My first experience was early in my career as an ICU nurse, and although I technically knew what brain death was, I had no clue how perplexing and traumatic it would be to sort out as a nurse, or for a family, or in regards to organ donation.

This week, I watched a story unravel in the Times that, after eight years of ICU nursing, is sadly familiar to me: Local patient declared brain dead after violent act, kept alive in organ donation dispute. Despite the lack of nurse voice, I have no major criticism of the coverage of this sad saga. I realize that analysis was not the purpose of these pieces, and the message behind the facts simple – with brain death, comes conflict. What I wish to explain, though, is how I believe nursing voice might bring clarity and maybe even comfort to this sad story.

No matter the background or the cause, I have never seen a brain death case that did not lead to, at minimum, traumatic confusion. Most of the time, as this story proves, brain death is often linked to sudden, complicated trauma – a crushing stroke, a violent act, a car crash, a drug reaction. More than most emergencies or incipient illnesses, emotions and conflicting desires encircle brain death care. There is mess. As one article’s clinical source aptly infers – when someone’s body is being kept alive by machines, there’s bound to be conflict in the family.

Brain death twists our familiar algorithm of hospital death in a horribly confusing way. One moment, a patient lies in the bed. This patient has a heart that beats, lungs that move oxygen, and a brain that reacts. Nurses and doctors work tirelessly for that patient, assessing their living body and the products of their functioning organs with second-to-second care. Then, tests are done, a protocol is followed, and suddenly, the person you’re desperately working to keep alive is, quite simply, no longer a person.

Typically, declaration of death follows a failed resuscitation attempt, paired with a visual display of absence of life, via the heart monitor. But in brain death, sometimes nothing physically changes. The patient’s skin stays warm, their heart keeps beating, and the ventilator continues the chest’s natural-looking rise and fall. You, the nurse, the family, the doctors, see the same patient in the bed – a person, with life to fight for. Except now, they are legally dead. It’s not surprising for me to read that Terrell Smith, the father of Thaiya Spruill-Smith, said, “my daughter’s still alive,” three days after she was declared brain dead; she likely looked alive.

Imagine me, as a young nurse, trying to explain to a young family, that, yes, their father was now dead, as the doctors had just told them, even though he lay in the bed looking exactly the same as he did an hour before. Heart monitor beeping, ventilator breathing, their increasingly persistent, “Now what? Is he gone?” expelling any sense of control or prediction we all thought we might’ve had for the situation. The brain, I think, is poorly equipped to handle these tricks of the body, amidst the emotions of death.

So, when the organ people arrive, as they always very quickly do, families – understandably – have a hard time. Sometimes, people decide right away about donation; dad had always told us yes. Other times, they fight and walk away. Often, patients’ illnesses disqualify them. Whatever the decision, the path to it is never an easy one. From religion, to family conflict, to just not wanting grandma to “die” on a certain day, I have seen many patients stay on life support and undergo aggressive treatment long after their time of death was declared. Bodies waiting in conflict.

Eventually, the end always comes, and the machines get shut off. The patient – the mother, father, sister, daughter, grandmother – that was already dead, “dies” a second time. This time, we all see it; the heart stopping very quickly, the body following brain. Loss relived again.

There is no point in correcting errors of speech in this indefinable moment – even Stephanie Clifford, one of the Times reporters on this story, wrote that little Thaiya died Wednesday, when her death certificate will more accurately list November 14th, the Friday before. Her family will probably always remember her day of death that way, anyway – the day when her little heart stopped beating, when they watched her go.

There is no right or wrong in any of these cases, there is only grief. A tiny girl shaken and hurt, while perhaps a perfect match for a million organs, is still gone. Her mother still spent her daughter’s last living day in police custody, receiving mixed messages from doctors. Her father, entangled in a court battle, thought his daughter was still alive, afraid she’d be “cut up.” Her stepfather will likely spend what would have been her youth behind bars.

So, what does this nurse wish to say? Closure is the most difficult thing for families to achieve in brain death, with a loved one’s mind cheating their body of a coordinated exit. Organ donation is much more complicated than a check on the back of your license, and while some people mourn by passing gifts forward, others grieve by keeping things whole and close. No choice is an easy one. Perhaps this sadness doesn’t need to be news.

Parents as advocates: the role of health literacy in parenting children’s needs

Kamil Fulwood Spagnoli

Kamil Fulwood Spagnoli

This post is written by Kamil Fulwood Spagnoli, a Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health.  Her full bio is here.

I recently had a personal experience with the Early Intervention (E.I.) program in New York City that illustrated how populations that aren’t proficient at wading through health information may be at risk of receiving a lower quality of care.    

The E.I. program was created by the federal government to provide evaluation and therapeutic services to children under the age of three who may not be meeting developmental milestones. There is a body of evidence that suggests addressing developmental delays sooner rather than later is highly effective in overcoming these delays

I am a well educated and health literate person. Most times, I have the privilege of having ample time with few competing distractions when I schedule appointments for my children.  For parents with survival concerns, spending countless hours in waiting rooms and then knowing how to argue and advocate to get the needed services for their child just may not be possible.

Parents advocate for their children daily. That’s our role. However, in this situation  I found it necessary to strongly advocate and challenge the system through every step of the Early Intervention application process for my son.  I had done my homework and knew what his needs were. I researched and knew the recommended therapies that he would benefit most from. Prepared and vocal, I was able to successfully advocate on his behalf and obtain services he needed.

Successful but exhausted it made me wonder about the experiences of other families who for many reasons including literacy, language and cultural barriers would find themselves unable to push to get what they need from  this program in order to meet their child’s needs. 

In a discussion with one of the program’s management officials I learned that the staff are not clinically trained. This person tried to defend his staff and explain to me that they are trained to match services to each child with current administrative guidelines and the reality of budgetary constraints.   

This information made me question whether the needs of every child are being met equally and adequately.  If parents are not health literate, unfamiliar with their rights or the ins and outs of how to work within this system, their child could suffer the consequences. 

Then the next question is: how does this unequal treatment of therapeutic services impact these children’s health and education outcomes? 

Many of the families who participate in the Early Intervention program have limited resources. Resources like education, communication skills and literacy are the building blocks of making informed health decisions.  This is an important question for us to answer– are children enrolled in a federally created program to address their developmental needs at an early age experiencing differences in outcomes based on their parents’ health literacy and ability to advocate?

Parents and legal guardians, the most important people in their child’s health and developmental process should have access to health literacy and advocacy training at the beginning of the E.I. process. Then their children will be better served resulting in better overall outcomes from the services in the program.  

Parents and legal guardians are key in the health and development of their children. In collaboration with their child’s health care and educational professionals, everyone is stronger in addressing that child’s health and development.  They become even better equipped to understand what a child’s needs are and can advocate for them. 

Parents who have these skills will then use them to enhance the lives of their families when facing other challenges.

Then we all win. The child, the family the community.

Healthstyles: Judith Schwarz on End-of-Life Choices plus Bedpan Confessionals

WBAIHealthstyles host Barbara Glickstein interviews Judith Schwarz, RN, MSN, Ph.D., a nurse expert in end-of-life issues. She retired from her position as the Clinical Coordinator of Compassion & Choices of New York and is now in private practice consulting with patients and their families on end-of-life decisions. On 11.17, reporter Nick Tabor interviewed Dr. Schwarz for The Daily Beast “The Nurse Coaching People  Through Death by Starvation”

Listen to the interview 

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In the second hour you can listen to “The Bedpan Confessionals: Tall Tales of Truth By Nurses, For Everyone

This writing series was curated, directed and hosted by Amanda Anderson for this past Fall’s LitCrawl NYC. Ms. Anderson is co-director of Hunter College’s The Nurses Writing Project.

Hear from LeeLee Milner, RN, PMHNPpractices as a psychiatric nurse practitioner in the homes of her patients all over New York City; Amy Berman, RN, BS, senior program officer at the Hartford Foundation; Roma Arellano, RN, BSN, CCRN, experienced intensive care nurse and advocate for night shift nurses; and Ellen Cohen, RN, CNM, author of the recently published book, Laboring: Stories of a New York City Hospital Midwife.

Listen to the Bedpan Confessions 

Healthstyles can be heard every Thursday at 1 PM on WBAI 99.5 FM Pacifica Radio.  It is also streamed live at

What Would #ThisNurseSay? Hard-Hitting, Expensive-To-Produce Hyperlinking

This post is by CHMP’s graduate fellow, Amanda Anderson, RN.  Amanda is a practicing bedside nurse in Manhattan, and a grad student at the Hunter-Bellevue School of Nursing, where she co-directs The Nurses Writing Project. Her personal site, This Nurse Wonders, hosts her writing, and she tweets @12hourRN

photoPerhaps I should have started this blog with a disclaimer: I read the paper. As in, I’m one of those worldly city dwellers helping to keep the New York Times’ shrinking home delivery market afloat. In addition to killing trees each morning, I eat pricey doughnuts in my $10 million kitchen. Or so I’m told.

My preference for formal, in-person breakfasts with The Grey Lady means missing out on hyperlinks. With newsprint wrinkling between my fingers, an article by Richard A. Oppel, Jr. about the new VA chief’s push to hire more clinicians, that mentioned nurse practitioners, seemed promising. But later, online, the same, “…nurse practitioners…,” led me to a chronological listing of all NYT nursing content. It took me a minute to realize I had landed on the equivalent of a generic Google search.

The lone, nurse-centric sentence in this article, which is about the VA Health system’s push to solve its critical shortage of providers, calls attention to the widely discussed idea that nurse practitioners might be a crucial part of the solution. But Oppel’s link wastes an opportunity for readers to understand the real story – or anything pertinent – about nurse practitioners.

The hyperlink is the modern-day citation, and really quite incredible. As a writer, it’s your wild card chance to allow your reader to choose to go deeper into the story, into another dimension of comprehension. Obviously, if, as a news organization, you hope to garner as many clicks as possible, it’s good to stick to self-promotion, like the Times largely does. But a well-linked piece not only has the power to contextualize an unfamiliar subject, it moves readers to act beyond the page before them.

A strategic hyperlink also helps readers see between the lines, behind the newsprint. Oppel’s mass-linking shortchanged his readers from understanding the specific reality that this new VA administration could bring to patients via its use of nurse practitioners: By filling provider gaps with these highly-capable clinicians in all fifty states, the VA would likely play a critical role in decreasing NP barriers to full practice, while simultaneously fixing its own short staffing. Regardless of the Times’ stance, readers should get a chance to enter this dialogue.

So, when the Times broke from its usual MD-speak and referenced “nurse practitioners” in print, it felt like a celebrated event. Deflated by his lackluster online follow up, I asked Oppel for an explanation. He dismissed my query with the simple: “I assume he [the copy editor] thought it would be good for people who wanted to read more about nurses and NPs.” Although Oppel linked other topics in the article similarly, it’s interesting that “doctors” wasn’t one of them.

I don’t think many nurses recognize the true power of the almighty click.  With each hyperlink we post or share, we pass along our stamp of digital endorsement, one that says we hope the organization or author we linked, sees more page views, readers gained, money made, information spread, and maybe even policy improved. Linking and getting linked to is a way of sending business, like an intentional product placement.  Me linking to these hard-hitting Times folk will likely go unnoticed, but if they linked to this nurse? Well, shoot. So, while it’s nice that Oppel gave the public a shortcut to the Times’ comprehensive nursing content, I’m starting to think twice about pushing free advertising – via my hyperlinking – to an orgaization whose linking morals don’t really line up with my own.

You see, the content behind Oppel’s link isn’t the biggest issue, here –  I’m primarily frustrated by its lack of intention. When I’m reading a sentence that suggests the existence of an ongoing discussion about a topic, it’d be a lot more helpful if I was directed to content that furthers my understanding of its specifics. Oppels’ – and his editors’ – blanket-link to all nursing content, when writing specifically about the role nurse practitioners play in solving the shortage of primary care physicians in America, suggests they see the nursing profession as a simplistic and one-dimensional topic unworthy of an intentional link.

Oppel didn’t have to take a stand, but he didn’t have to halfheartedly link, either.  I found plenty of articles via his original link that might’ve prompted a meaningful dialogue about this topic. After I typed in, “nurse practitioners,” that is.

Healthstyles: HealthCetera, FierceforBlackWomen, Bedpan Confessionals

Tune in:

photo credit: Microsoft Lumia Conversations

photo credit: Microsoft Lumia Conversations

Barbara Glickstein hosts this week’s Healthstyles on WBAI Pacifica Radion 99.5 FM streamed at at 1PM to 2PM.
She opens with HealthCetera:
Hear her interview with Colleen A. Daniels, the Director of TB/HIV Project with the Treatment Action Group, an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS and its two major coinfections, TB and hepatitis C. She reports on the findings of the 2014 Report on Tuberculosis Research Funding Trends, 2005-2013.

“Collapsing pharmaceutical investment in a disease of global concern such as TB is alarming,” said Colleen Daniels, TAG’s TB/HIV project director. “Public and charitable institutions have matched and exceeded investments made by pharmaceutical companies in their own products, but it hasn’t been enough to keep industry involved. The current R&D model is broken and is failing TB patients, who have had to wait decades for better diagnostics, drugs, and vaccines to fight TB.”

In the second part of the hour she celebrates the first anniversary of‘s with co-founders Yanick Rice Lamb and Sheree Crute.
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This week’s Healthstyles ends with the first of a series of readings from the live recording of “The Bedpan Confessionals: Tall Tales of Truth By Nurses, For Everyone”.
Listen to the series here:

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